Don't worry mommy ...

The three most dreaded words a child can utter.  "Don't worry mommy....".  For Espen those words can only mean I better watch out!  "I didn't eat it", "I didn't poop on the floor," "I won't fall to far from the deck".  He is a clever and creative little boy.  But also mindless of the danger he may be facing by doing the stunts he imagines are going to be tons of fun! 

Most lately, he has been saying "Don't worry mommy, I have SPD".  And if you ask him what that means he can tell you Sensory Processing Disorder.  We have all the children's books about it and he loves to read about kids like him.  Kids who like to crash into things or fear loud sounds or are bothered by clothing.  He can tell you that SPD makes him feel normally crazy!

My son knows he is gifted in many ways.  Yet he can't comfortably look me in the eye.  That is sensory overload for him.  He can't use a fork for dinner.  It is just hard and his frustration goes through the roof so we make adjustments.  He can't stop screaming at the grocery store or in the car about the sounds and the lights.  He can't write his name or draw me a picture.  Holding the crayon is a frustrating challenge.  He can't wear pants with buttons or zippers.  He lacks the dexterity to fasten them back up and independence is a huge issue in our house.  He doesn't get the opportunity to play much with other children because parents are concerned with his strength and crashing into them. 


All of these things the occupational therapists help with.  And it gets better some days and worse some.  We just keep going.  And we are thankful for his giant vocabulary!  So that he can learn to tell us the SPD things! 

Normal things in our house are not normal in yours!  It is normal for us to be outside no matter the weather.  It is normal to have few distractions or noises in our house.  It is normal to wear 4 or 5 or 6 changes of clothes every day!  It is normal to make giant messes with flour, water, paint, goop, chalk.  It is normal to have a sensory swing in the dining room and a scooter board in the hallway and a mini trampoline in the living room.  It is normal to hang from the pull-up bar and eat while standing.  It is normal to take baths 2 or 3 times a day and to still use a binky.  It is normal to have no shirt or socks on even on the coldest days.  And fast... we are sorry if you can't keep up with us.... we move very quickly and that is normal. Don't worry, Espen has SPD and it is normal and fantastic and aggravating and confusing all at the same time.  Even for him!  But he knows it is how he is.  It is his normal. 


Sometimes people don't understand or they get scared or concerned.  That is ok.  Sometimes kids won't play because he is to rough.  And that is ok.  "Don't worry mommy, I have SPD, but I gotta try, gotta try."  My child is amazing.  Just get to know him! 

This is our normal...  nothing we do is weird or remarkable.  But consider if your words or remarks are hurtful to one small little boy who wants to try.... Consider if your children call him weird or stupid how that feels....

Don't worry Espen.... mommy believes your normal and just as you are meant to be....

Summer Activities

The summer, although the weather is not demonstrating it, is nearly here!  End of school is clearly in sight.  In Nebraska parents are already planning the summer activities for their children.  So I jumped on that band wagon and started to think about what we would do for the summer.  We are on a tight budget and can't afford to go to every activity but the importance of participation in summer fun does not go un noticed! 

I can't speak of every community but if you are looking for great things to do with your child or children this summer here are some places to start...

• The library ~ reading groups and programs, check out books on themes or topics for home activities.  Most typically these are free! 
• Whole Foods ~ cooking classes for all ages, but especially great ones for half pints!  Great way to get your child to eat different foods or try new stuff!  In our area it is $8 per child per class. 
• Forest preserve ~ outdoor day camps, explore and see different natural habitats
• Sport camps ~ I found a gymnastics studio, the ymca, a dance studio, a martial arts studio and athletic centers all have sport/athletic things for children
• swimming pool ~ swim lessons are so important for kids!  Last year I paid so much for pool visits and for the pool in our back yard that this year I joined a country club social membership for the summer.  It is CLOSE and we can use the pool anytime! 
• ice skating ~ ESPECIALLY when it is really hot!  It makes for a great place to COOL off!
• roller skating~ our local rink has classes & programs all summer long
• zoo & museums ~ both near us have summer programs.  We tried the zoo camps last year and did not like them.  Ask some questions before paying for it!  Memberships help off set multiple trips to these locations! 
• art centers ~ look for community art facilities.  There is typically someone teaching a mixed media type class!
• splash pads or your garden hose!  Great way to cool off for free! 
• garden centers ~ a clever and fun way to be around plants.  Frequently they have some basic classes or demonstrations and children are super interested in what grows.
• project swap ~ trade afternoons with a mom friend and entertain all the children for a couple hours in some project or activity.  Maybe a giant finger paint party, pedicure party, bake up something fun, take a nature walk and find things

Hopefully our summer is equal parts sitting by the pool and swimming in the pool but we may need some other activities so we will see where our desires lie!!  I'd love to hear your ideas for summer fun!! 

Obsessive Compulsive

My son will be 4 soon (hard to imagine).  We have had some very rough days where I was just WORN down.  Our issues lately are getting better to understand.  My patience is on extended service.  Except the obsessive compulsive behaviors. 

Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions).A.D.A.M.

Often the person carries out the behaviors to get rid of the obsessive thoughts, but this only provides temporary relief. Not performing the obsessive rituals can cause great anxiety.

We are no where near an OCD diagnosis but he has tendencies that mock the erratic behaviors. The repeated thoughts and ideas that drive him to action and fits of uncontrolled worry!  It is hard to reason with him, persuading him to something else is nearly impossible and forget about changing his mind!  The last 3 days he has been OBSESSED with his whistle.  He is driving me insane! 

He asks, searches, talks about, begs me to find, helps me search and strongly demands the whistle.  It is nothing more than an inexpensive whistle Hannah got him on one of their excursions to Target.  But the last few days he has worried, cried, cajoled and harassed me about the whistle. I can not find it.  No where.  On and off now for 3 days I have had to calm him about a whistle and I am 100% certain that until we find the whistle, he will question me and we will look for this whistle. 

He remembers and recalls things and he worries, stresses and has anxiety when we can't find it or satisfy his obsession.  Thankfully it is most always only one issue at a time.  I have been dealing with this quirky behavior since he was able to talk!  Unfortunately, it seems to get weirder as he gets older.  I find the best way to manage him when he is obsessed and compulsively doing something is to be calm.  I always assist in the search if there is one.  I try to keep his anxiety at a minimum and focused on just the one thing so that he doesn't stress and worry about unnecessary things.  I try to get us to a safe and quiet place.  We keep things in a fairly organized manner so that things don't get lost.  Because he is not just obsessed with things but activities and people we have a schedule so there is little surprise in his routine.  If I tell him we will do something in a particular order, we do it.  We don't give him much "warning" about holidays or birthdays because he will worry, stress and have fits about what will happen.  The word SURPRISE is not a good word at our house. 

My son... almost 4.... and the fun never stops!! Now excuse me... I have to go look for a whistle!! 

Giving up or changing the dream after SPD...

We met Sensory Processing Disorder like a tin roof meets a rain storm... crashing and pinging uncontrollably!  We didn't know it was coming.  We couldn't prepare.  We were quietly getting along and then BLAM... the storm rages.  Sometimes it is quieter except for a soft tinkling then the boom of thunder tears up the silence and we are back to the crashing!  After 3 years, we know how to roll with it! 

I tell Espen our lives are like the ocean.  Sometimes a storm comes and we smash to the ground, wildly and without ability to stop.  Other times we are so still and calm that there are no waves at all.  Most of the time however we are just a wave rolling along consistently meeting the sand and pulling back.  He can understand and visualize the ocean.  He has seen the waves and knows what it feels like, sounds like, smells like, tastes like.  He remembers that if you are in the way a wave knocks you down and fills you will salty spray.  Sensory Processing is the ocean for our family!  Just like the ocean, we have our high tides and our low and we sometimes crash about wildly!  Occasionally someone gets hurt but we get right back up and keep going. 

I never dreamed my child would have this disorder.  Frankly when I was searching for help, I never thought I'd find any and that I'd just struggle with helping my child assimilate to societal norms on my own.  I spend a major part of my time reading and getting information, asking professionals and learning to help and understand my son.  I learn every day.  As does Espen. 

Part of understanding my son, the disorder and how it works in our lives is letting go of some of my "dreams" for him.  Just like every parent, I want him to participate in school and sports and activities.  I long for him to bring home an art project or a card or picture he made for mommy.  I hope for a hug given on his own.  I want him to have friends his age to play with, pals he can share secrets with.  Successful in school and eventually work, I want him to travel the world, meeting fascinating people and seeing amazing sights. 

Perhaps my dreams for him are grandiose. 

Yet Espen does participate in school... and twice a week we both have so much anxiety about it.  He can't sit and focus because there are so many other things happening inside and around him.  And I have heard nothing after 8 months other than how bad my child is.  We have only 10 more days and then summer to recoup and see what happens in the fall.  He is not bad.  I have not one time this year had a single project get sent home.  I can count on one hand the times he got a "good day" report.  I have heard that he "can't do" what everyone else can.  Yet he can write and recognize an E for Espen.  He can cut and draw shapes.  He can sing silly songs.  He has a sense of humor like a comedian!  He uses the bathroom alone.  He is learning things and I am proud of what he is doing!  Especially since I know his fine motor skills are delayed and that it takes huge effort to focus on a simple task.  He is excited to see me when he is done but never tells me one single thing that he did in the 3 hours he was at school. 

He participates in sports... he can ice skate and swim.  The things he is unafraid of trying scare me.  Yet he does them without hesitation.  It is amazing to watch him try to figure out how to cross one skate over another.  Or swim and do side breaths.  He can and does those things.  Because he doesn't have the pain to know falling hurts.  Because crashing is fun. Because being under water for long stretches at a time make him feel great and it is quiet underwater.  Because fear is not understood.  I can see growth in my son.  I encourage and afford skating and swimming because it is good for his body and mind.  But I wanted more....

After much discussion, this summer we opted out of organized sport participation.  He is not a candidate for soccer or t-ball or football.  Whistles drive him nuts, large crowds freak him out... these sports are not for him.  As much as we want to go see our son play ball we understand that those things right now will set him up for a failure.  So we stick to summer activities we know we will succeed at.  We will swim.  We will skate.  We will see about gymnastics especially jumping!  He is running and wants to run a race with mommy.  All of these he will feel successful at and we can enjoy watching. 

I do art projects with my son.  Or more aptly, I TRY art with my son.  He feels good when he can FEEL it, smell it, taste it.  Our art turns messy fast.  From the time he was tiny I allowed him to just be dirty.  So if I get out finger paint I had better be prepared for a naked child who is rolling in paint.  It is a rare day to sit and color quietly or paint a picture for mommy (like it NEVER happens).  And yet I encourage large messy things.  I let him paint the driveway or garage floor.  We put a chalk board wall in his room and my studio.  We have window markers.  We have face and body paint. We use permanent marker to make tattoos.  I can't save any of those for my wall but I can get some great pictures of my child having a fantastic time and I can put those on the wall!  But understand my frustration in just wanting once in a great while to have something cute and great to hang on my fridge or wall that my son made! 

I don't get a lot of hugs or snuggle time with my child.  Hugging is not something that feels great for him.   I get crashed into.  I get tugged on.  I am the monkey bars.  I understand my son.  These are the ways he loves me.  I make him safe so I am the one he crashes into. 

Even with some social anxiety I encourage Espen to meet people.  To chat aimlessly with strangers is not uncommon.  He invites random folks to our house.  But I listen.  If someone smells bad or gets to close I know I will need to remove or intervene quickly. His curiosity will lead him on new adventures... of that I am sure. 

This child is my gift.  He is my joy.  I will not give up my dreams for my son.  But I will make adjustments to what is most important to ME and learn what is best for HIM and encourage, afford, support him in that!  My child is one gifted little boy.  He may not fit into my ideal dream but he fits into my real life!  He may not fit into societal norms .... so I don't make him.  I explore every opportunity and create a path all his own. 

This crashing ocean is not what I hoped for in a family but it is the one I've got.  I can jump the waves holding his hand or I can be swept under... I choose to hold on and keep jumping.